Sometimes it’s hard to start writing, because you know where it has to end. In this case, I need to state that Lucy Glennon, writer, campaigner, lover of tiny dogs and Guardian contributor, has died at the too-young age of 29.

Lucy had the rare skin condition epidermolysis bullosa, which she wrote very movingly about for G2. More importantly, she was a total badass. I first “met” her, as many did, through the internet – in my case, due to an early, long-defunct blogging platform called 20six, through which she (and I) made many lifelong friends. She was a brilliant, amusing, anarchic spirit. In the words of her close friend and fellow blogger Neil: “She made my world bigger. I did all sorts of things I’d never have got to do because of Lucy, and I’m meant to be the able-bodied one.”

Lucy made the move to London from Rotherham after university, despite the complications of her condition. The last time I saw her was at my birthday club night, last October. Frustratingly, she wasn’t able to make it downstairs, due to the awkward stairs. But typically, she brought the party to her. My last memory of Lucy is of her surrounded by friends.

“Lucy was a confident, capable, inspiring and tenacious young lady who achieved much personally as well as for the EB community,” said Helen Weaver, on behalf of Debra, the national charity for people with the condition, “by raising awareness, taking an active role at Debra, by attending fundraising and community events and writing about EB in the media.”

At one such charity event, she met Sean Bean … and David Cameron. One of these figures impressed her more than the other.

Lucy wrote witheringly about public perception of disability during the cuts, as highlighted by her friend Kaliya Franklin, who posted a moving tribute to her on her blog, Benefit Scrounging Scum:

EB is a uniquely painful and cruel condition. The skin and internal organs are so fragile that even a light knock or bump can cause terrible trauma. Morphine is required for things like nappy changes and parents are unable to indulge their natural instincts to hold their babies as close as they want when they scream with pain because it can damage them.

It was typical Lucy that she referred to the fentanyl suckers prescribed for pain as her ‘crack lollies’. For a while during 2010 and 2011 they helped keep the worst of the pain at bay and Lucy poured her characteristic determination and passion into writing, calling out politicians for an increasingly common bullying attitude towards those on disability benefits.

Writer and director Fiona Laird said:

That she lived with epidermolysis bullosa and faced the horrors it threw at her with humour and a fortitude verging on impatience is testament enough to an extraordinary woman.

That she also spent so much of her short adult life campaigning on behalf of other disabled people (particularly for others suffering with EB) for the support they so desperately need was the hallmark of a truly exceptional person.

She was a talented writer with phenomenal amounts of drive and compassion for others. She was sweet. She was naughty. She was funny. She was a one-off.

She was certainly that. I’ll leave you with a story from Neil, who knew her better than most.

There was one night we were coming back from being out and about round London. It was a warm summer night and I was pushing her back to the flat. I can’t remember how the conversation came about, we were just talking nonsense the way friends do.

For some reason she’d decided I was her pimp who pushed her about on the streets touting for ‘business’. We were laughing and joking about the whole thing when she came out with a line that made me laugh out loud. A proper loud belly laugh, so that other people in the street looked round wondering what was so funny.

In a little deadpan voice, she’d said, ‘You’ll have to tell ’em it’ll cost ’em double if I get out of the chair.’

We’re all going to miss her.

Lucy on Twitter

Lucy was as good at Twitter as dolphins are at looking cool underwater. So it’s only right that I share some of the tributes she received there too. Please do share any memories or tributes that you have in the comments below.